New to Website, But Not To Hair Loss – Joanne’s Story

I received this email from an amazing gal named Joanne, and I asked her if I could post it for all of you. I have always felt that it is so healing and helpful to hear the words of another going through the same thing we all have been going through. To relate, to understand, to learn… anyway you slice it or dice, sharing is healing. 

Here is Joanne’s Email 

I’ve stepped into a little bit of heaven finding you and this website. I commented to you on Facebook, that you are an amazing and beautiful woman and I wished you lived next door to me! Ha, ha. Yeah, how nice it would be to commiserate and get a Starbucks with someone who understands. It’s so easy to feel isolated with this hair loss crappy lot in life, but your website has opened a door for all of us closet sufferers. I thank you for that, from my heart, along with all the rest of the women on your blog.

Ok, here’s my story: I once had pretty, silky, blonde hilited hair. I once felt pretty. I once liked being in pictures with my two blonde sisters. Then, After being diagnosed with autoimmune disease – I noticed my hair shedding beginning. The drain in the shower, the drain in the sink while blow-drying, my hairbrush… What the heck was happening? I talked to every medical person I could find, a Rheumatologist, a Naturopath, my regular MD, a Dermatologist, my Hairdresser, anyone who might know the answer. I wanted someone to save my hair for me. PLEASE! I so desperately wanted a “diagnosis” that could be corrected by just taking something or doing something. My thyroid levels were normal, my blood work, normal, except for my abnormal ANA, but I was told that alone, shouldn’t be the cause. Biopsy of my scalp, normal. Everyone had an idea, of what to try, but none of them worked.

No matter, my hair kept shedding. I tried every holistic and dietary thing I could that held out even a vague promise. Some periods of shedding seemed to slow but then others were worse. It seemed there was no going back.. my hair would never rebound.
It was excruciating to see myself in the mirror and even more so to see myself next to my two sisters with their beautiful thick blonde hair. I felt like the ugly duckling sister and never wanted to take family pictures after that. Sometimes, my family would tell me I was being “silly”, oh really? Let’s switch heads for the picture then. I was told I was “still” pretty, get in the picture. I often thought, if they were me, they would NOT want to have their picture taken next to two thick blonde heads! Easy for them to say! My husband would tell me I was “pretty” too. My hair was “pretty”, I shouldn’t worry so much. They were all trying to be nice, trying to make me feel better, but they didn’t know how this was consuming me, ruining my life, making me refuse parties, events, anything where I couldn’t somehow hide my hair.

I tried extensions. Wow, big mistake, they just took more of what little I had. Now came my first big challenge. I had a family wedding I couldn’t get out of. I was driven to despair. I told my husband I could NOT go. He was NOT happy. It was his family and for me to say I couldn’t attend because I no longer have any way to “hide”, was an excuse he could not relate to. I looked OK to him. He didn’t see a problem with me pulling my thin strands into a pony tail the size of a two year olds, supplementing that, with a tiny, thin piece of bangs, struggling to look valid, across my forehead???

I talked to the person who used to hilite my hair, when I had enough to work with. (She was terrified to hilite it anymore for fear the rest of it would just fall out. Instead, she just kept trying to cut what was left, as best as she could.) I cried about the wedding to her and she suggested I go to a local shop and try a wig. I knew NOTHING about wigs. I was terrified, but desperation will drive you to try almost anything. The only human hair wig that resembled how I used to look, was too big for my head and had way to much bulk, but I bought it anyway. I thought I spent way too much, again, knowing NOTHING about wigs – little did I know that a really good wig would be 3 or 4 times what I had just paid! I took it to my stylist and she cut it and put “roots” in it, to try to make it look as natural as possible. I felt like my head looked inflated, there was so much hair. My stylist did a great job with what she had to work with and thinned as much as she could without allowing the cap to be visible. So it was either that or no hair.

I went to the wedding and people kept asking me what I did to my hair. Ahhhhgggghh, I wanted to run out crying. Why can’t they just enjoy the wedding and keep quiet about my hair, why??? I kept saying I just got extensions, but they would look at me like yeah, right. One family member said, “I’ve seen you with extensions before and it didn’t look like that!” Hmmmnn, really? Was all I could come up with. So, great, now I was so self conscious the whole night, I could barely eat or carry on a conversation. All I could see or imagine I saw, were people looking at my head. My husband thought I was over the top. After seeing pictures of myself from the wedding plastered all over Facebook, I wanted to just throw-up. I began to think that maybe my husband was right. Was I over focused. Was I just obsessed over something not that big of a deal? Then I began to answer it for myself: Yeah, I’m probably just too vain. I’m too insecure. What’s wrong with me? Why cant I be happy , Why can’t I see myself as pretty just because i don’t have all my hair, its not like I’ve lost an arm, a leg, my eyesight, for God’s sake.

Oh, these conversations were daily, as I went through my morning Starbucks drive-through, dreading to have everyone who knows me there, see the bulky wig! I went no where without it, though. Bulky hair was better than no hair! I began to pin the sides back to minimize the bulk, and that sometimes seemed to help. Then one day, while googling: best wigs, very best wigs, best wig ever made in the whole wide world, (just kidding) Voila! I stumbled upon Follea. I found a distributer about 2hrs away and made an appointment. I bought not one, but two. Hid THAT fact from my husband for a month, as the cost of 1 gave him heart palpitations. But I finally had a wig that felt like it belonged on my head! It was close to my scalp, and it MOVED like REAL hair does!! I was ecstatic!

But of course, we who suffer from this hair loss thing, know that the excitement isn’t simply happy ever after. There is the still the daily dealing with issues of how do I…. go to the beach? swim? go to the gym? get a chiropractic adjustment? a facial, a massage, OR, allow someone to give me a big hug without freaking, because it has previously happened that “MY” hair has been grabbed and pulled backward in the process!! These are just some of my daily anxieties.

Being seen without the wig, is a terrifying ordeal for me. If I take it off because my head needs a break, I worry someone will “catch” me without it. While I’ve found freedom from being socially humiliated with almost no hair because I now have a great wig, I’ve still got the “issue” of being “wig-less”. There’s still that woman I don’t want to see, staring at me after I take my makeup off at night and after my shower in the morning.

Finding this website only a day ago, has been like a lifeline. I can’t stop reading everything on it! I so admire you for starting it, for caring, for being brave enough. I’m still not brave. I still haven’t admitted to anyone that its a wig. Only my sisters and husband know. But I feel like I have an avenue now, where I can walk down and meet friendly faces and read similar stories that give me hope and encourage me to stop hating who I see in the mirror and get to love ME again, with or without my hair! Thank you, thank you, thank you, thank you, thank you… a million times over for doing this. You are an angel, a Godsend! Much love , Joanne

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Dear Joanne –

Thank you so much for taking to the time to write and share your story! And double thank you’s for all your kind words. When I read your words, as I wrote you on Facebook  and emailed you yesterday, all I can think of is “I am you, you are me” and then I imagine us standing there pointing at each other, bursting into tears and hugging. I’ve been meaning to update “My Story” on the site and I think I’ll just paste yours in there because it’s pretty much the same, so it will save me time! LOL 🙂 I’m constantly amazed how many of our stories are so similar.

Unless someone has gone through this it is so hard for them to intimately understand the magnitude of damage and toll it can take on our lives – spouses, family, and friends often don’t know what to say or can’t understand that it IS a VERY big deal. It’s pieces of us breaking off, slowly. I felt I was degrading before my own eyes, with no end in sight, no STOP button to push. Sheer panic. I often think of myself as Exhibit A of a life lost for over a decade, a prisoner to hair loss, but there are so many women like me, like you, who sometimes live their WHOLE life and never get past the effects of hair loss. I believe we have to get over ourselves, to heal ourselves. Let go of something that while we assumed SHOULD be ours for life, sometimes was simply on loan. Our hair. There is a STOP button I just didn’t see it before and perhaps it only revealed itself to me when I was ready to push it.

While there are still challenges ahead, yes, you mentioned many of them, gym, beach etc… once you decide to longer be a prisoner to this, a whole new world opens up. Once you make peace with wearing hair and then find the hair that makes you feel like you again, you start to feel more in control, or at least I did. I much rather ponder over how to get to the gym or what to do at the beach or in a massage and know that ALL the rest of the time I will feel good about myself. The longer you wear hair, the more confident you become in the hair. You start wearing the hair, and not letting the hair wear you 🙂  Ultimate freedom will come for me, when I truly do not care who knows I wear a wig, that will be freedom. “Yes, I’ll have the deep tissue massage. Oh, I’ll just put my clothes over here with my hair” and then just take off my wig and lay it on my jeans if that is what will be more comfortable. I’m healthy, I’m alive, and my hair is removable, the quicker we get over it so will everyone else right? I’m a work in progress.

We need to do what we need to do for ourselves to heal ours souls and bring us back to life, whatever that is. Throw it on, glue it on, shave it off or no nothing and take solace in the knowledge you can do something when you choose to. Hair is important, yes, I agree – but isn’t there so much more to life? We have to remind ourselves of that and it’s not easy, boy do I know it’s not easy.  I’m saddened to look back at my 20’s and realize I slept through it all and watched it go by in a fit of a crying blurred haze.

I know you’re early on in this new direction in your hair journey, as am I, but doesn’t the road look so much smoother? I even think I see a rainbow on mine,  I bet you can see it on yours too 🙂 There’s hope for all of us.

XOXO

Much love,
Y